The 2-Day CPET, the CDC, and the IOM - Mary Schweitzer Explains It All

Editor's Comment: In case you are suffering from acronym overload (CPET, PEM, CDC, IOM, CFSAC, HHS) this excellent blog post written by Mary Schweitzer, a veteran ME/CFSer and patient advocate, puts it all into perspective. The post originally appeared on her blog Slightly Alive on September 16. 2013. Reprinted with permission.

Why CDC must use two-day CPET testing - and specialists must define the disease, not bureaucrats

By Mary Schweitzer

So Dr. Elizabeth Unger and the CDC have decided against a two-day exercise test in their supposedly all-encompassing, supposedly cooperative, upcoming CFS study.

Why am I not surprised?

When normal people go walking or bicycling or jogging, it is called "aerobic exercise" because while their body is exercising, it's using normal amounts of oxygen from air with carbon dioxide being expelled through their lungs. If you do aerobic exercise regularly, it is good for you. You get stronger and can go longer times or distances. For a normal person, aerobic metabolism can be measured with heart rate: (220 - your age) times 60% for the lower bound, (220 - your age) times 80% for the upper bound.

If your heart rate exceeds the upper bound, you're no longer operating in aerobic metabolism - your body will shift into what is called anaerobic exercise.

Weightlifting is an example of anaerobic exercise - you go past the point where the muscles can get enough oxygen from the lungs, and they start breaking down muscle to get it. That's okay - the muscle rebuilds stronger. But if you have to give the muscles a two-day rest, so in training, you either alternate working on upper body one day and lower body the next, or do weightlifting every other day.

If you push harder than that - even as an athlete - if you go too far with the supposedly aerobic exercise that your body switches into anaerobic, or do anaerobic exercises (like weightlifting) too frequently, the body starts living in anaerobic metabolism, and that is bad, because breaking down too many proteins this way poisons the body. If you don't have the good sense to stop, your body does - eventually it will MAKE you rest.

A gung-ho young athlete who is improperly trained can screw himself up with too much anaerobic exercise, and then his/her body will just refuse to keep going - for up to 3 weeks. That is called "over-training syndrome."

Professional and collegiate trainers keep close tabs on their athletes because of this.

For some reason our bodies shift into anaerobic metabolism (generally anything that sends our heart rates over 100) too soon. In my case, just walking does it when I'm sick. So you could say that our bodies are responding to "normal" activities as if we were athletes pushing too hard, that is, to a certain degree we are perpetually in the midst of "overtraining syndrome."

People with a bad heart have the same problem, and again they turn to the VO2 MAX stress test to measure it.

A recent set of studies* have found that those of us who are REALLY sick score badly on just one day of exercise - which then makes you wonder about the over-prevalence of heart attacks among us. So a score in the danger range (that would be me off Ampligen) should be taken seriously.

Most patients in this study are not going to score THAT low - they will score low-normal. The problem is, so do couch potatoes.

The amazing thing Staci Stevens and Chris Snell found was that high-functioning patients may score the same as deconditioned controls (the afore-mentioned couch potatoes) in one day of exercise - but on the SECOND day, the controls' scores don't change, whereas the patients' scores plummet IN HALF.

Which makes sense if you have a good understanding of this disease. But is really quite an astonishing finding for outsiders.

AND it is the best argument we have with which to make the case that graded exercise programs can hurt patients. Can make them worse. In some cases, can leave them paralyzed (something no one in government wants to talk about).

So if you want to measure that cardinal symptom of our disease that is often called post-exertional malaise (PEM), or post-exertional worsening of symptoms, you need a TWO-DAY test. Otherwise, we don't come off any different than someone who is not in shape.

Which means that by refusing to do the two-day test, CDC's results will make it look as if graded exercise was a good idea.

And that is bad. Bad enough that I think we are being set up. You can't say CDC doesn't KNOW that the two-day test has a different meaning - Chris Snell used to be president of CFSAC. And I've attended FDA meetings where Dr. Unger and Dr. Snell sat on the same dais. She knows. She is CHOOSING not to do the two-day test, knowing full well that it is the TWO-day test that demonstrates PEM.

Now, you're CDC. Supposedly the best in the world. You'd want to use the best methods, wouldn't you?

CDC's explanation for not dong the two-day test is that it would be an imposition for patients. But both Staci and Chris found that while the deconditioned controls could get whiney about having to do the test, patients with ME/CFS (Canadian) would walk on hot coals if it would move the science of this disease further along. So the supposition that the patients wouldn't want to have to come two days in a row does not fit what we already know.

The only time I ever saw Dr. Unger get angry in a CFSAC meeting was when we were all calling for a change in the CDC's recommendation of graded exercise. We asked not only that they quit recommending it, but also that they openly WARN physicians about the dangers. She was furious. She said that the emphasis on graded exercise was supported by scientists and was not negotiable. Those very words. Not negotiable.

Thus, by constructing this new study in such a way that patients will look like couch potatoes, Dr. Unger and CDC preserve their nonnegotiable stance of promoting graded exercise.

Why do I feel like I am being set up?

I think I'll ask Dr. Unger about that at the next CFSAC meeting. Oops! No can do - I'm not invited. The public is being excluded from the next CFSAC meeting, except for our pathetic little five-minute phone-in testimony.

I also noticed in the latest CFSAC announcement that CDC has returned to the IOM, where nobody knows anything about this disease except what CDC tells them, for the "new definition." The community of ME/CFIDS patients and clinicians had strenuously protested this through appropriate channels; CDC responded that they they heard us and were backing off - but not two weeks later, they have already gone back on their word.

My apologies to those I missed, and those whose affiliations I missed. The larger point is that these are clinician-scholars working at top-level institutions. They should not be ignored.

Please Discuss This Article:

Great article!

Posted by: labbelieveOct 9, 2013

I can't even begin to explain how this strikes a cord with me. Interested in learning more about this testing, as my care providers are not understanding this. Who would do this testing to help to understand the state of our conditions?

I thought I understood the whole PEM thing until I read this. as for the politics of it that's another story. Mary you are brilliant and obviously a natural teacher. I just spent two days with my baby grandson, helping out my daughter. for most people a delight and a pleasure, but now bed bound and looking lazy to outsiders.

Most of us trying to have a bit of a life are doing a non stop PEM test.

You are the FIRST person to explain this oddity in a way that I can understand it and I can share this with others and they will understand it.

Before I was really sick, I would frequently sign up with friends at their gym for a "free week trial" period. I'd do okay at first, but would always notice and about how my Heart Rate would shoot up freakishly with me going 1/3 the pace of my friends. We'd make jokes about how weird it was.

I had a one time doctor's offc treadmill test (after resting for a week) and it came out in the "couch potato" normal range but didn't shoot up like it had so many times before.

How can I help you (walk through hot coals) get this 2-day test to become the standard?

I'm writing a PhD on the conflicting paradigms of ME/CFS, and how the psychiatric paradigm gains dominance. Dr. Unger says that there is scientific evidence that exercise is good, and this is non-negotiable. We know it harms us. This research exercise has clearly been designed so that the results will support exercise - the refusal to use a 2-day exercise test will guarantee that. How can we find out/does anyone know where the influence is coming from that is behind this stand - and the accompanying proposal for IOM to provide a definition. We already know that the outcomes of both of these exercises will support the psychiatric paradigm - how can we find out where this powerful influence is coming from? We need an investigative reporter...and this is what I want to investigage. Help, anyone?

It is absurd how terrible people with this syndrome get treated. If there is anything I can do to help the cause, please let me know. Sometimes I think I got this syndrome to understand it better and help others. Any thoughts or comments on banding people together that want to fight the CDC and get this more publicized? I have personally been a 12 year sufferer.

Part of it, perhaps the majority, is politics in one way or another -- the remainder is about money.

The politics angle might be tackled *somewhat* by finding supportive White Knights, champions in politics. The widely accepted danger of course it displeasing the other side so-to-speak, but if you feel we're up against the wall anyway, maybe there's not so much to lose.

But politics also rears it's ugly head in the universities, associations etc. -- science & medicine are taught, researched, accepted as long as they *fit* within whatever widely accepted guidelines. I don't want to open up a can of worms here, but the best example I can think of is global warming -- I have no idea nor do I take either side, since I'm too ill to spare the physical/mental resources but the refusal to debate, to even countenance that there may be another viewpoint is more than similar to the CDC's actions.

I don't know how you could hope to beat that non-scientific, scientific bias. And alas that's also where money also comes into play... researchers commonly nudge if not outright fudge results in the pursuit of funding from familiar & friendly sources. It's triply hard IMHO to find funding if you're not already part of the established community, dare to propose research with an unapproved goal, & looking for actual rather than predetermined results.

I have included an ME/CFS Patient’s Strategy for dealing with HHS and IOM problem below. This is based on the detailed analysis I did last week. Its also based on successful strategies used in the past. You will find this very useful.